Table of contents
Building your Network
When you have a child with autism and you inevitably begin to form a network of people in your life that you will be working alongside in the best interest of your child. It usually starts with your pediatrician, then perhaps a child psychologist or neurologist as you begin to explore what might be going on with your child.
Once you have a diagnosis of autism or autism with additional diagnoses (ADD, ADHD, tourettes, rhetts, etc), you then begin the journey from the medical world into the behavioral therapy world. The network is now expanding to include behavioral therapists and behavior techs.
Add school to this network and you can count on adding the IEP team to the network which will include the administration, special education teachers, general education teachers, speech pathologists/therapists, occupational therapists and the school psychologist.
This network doesn’t include other parents with children who are also on the spectrum or community programs or organizations that host events and raise money for specific needs and programs for autism related services.
Before you know it, you are swimming in an ocean of information and opinions from everyone in each one of these groups.
Parents Know Best
When you have a child who has been diagnosed with autism, you have a variety of professionals available to work with your family: medical staff, behavioral intervention staff, school staff, IEP team members, other parents, autism support groups, specialists in speech and occupational therapy and recommendations for just about anything you can come up with a problem for.
Still, there may be times during your child’s school years or behavioral treatment plan when oversights may occur, adjustments need to be made or a whole new approach may need to be implemented to reach the next goal.
If you have tapped into every resource that has been recommended to you and your child is still struggling, then it is time to step back and follow your intuition. You are the number one resource for your child. You are your child’s number one advocate and you always will be, because no matter how many professionals there are in your network, none of them know your child the way you do. None of them love your child the way you do. None of them are invested in a lifelong journey with your child the way you are.
Your network is functioning by textbook rules and outcomes for your child’s diagnosis and they are making adjustments along the way each time you meet with them. They are not there to see the daily outcome or the daily challenges that arise. You follow their suggestions and because they are professionals you might question yourself and second guess yourself with self doubting statements like: “I don’t know what I’m talking about” or “I’ve never done this” or “I don’t want to be a nag”.
At the end of each day, you DO know what you are talking about and you ARE doing this every day and you are NOT a nag. The professionals in your network are paid to help you and they should be available to graciously answer your concerns at any time.
Ultimately, no matter who is in your network, research shows that children who have parents who become strong advocates for them succeed beyond expectations. They also make consistent progress despite any obstacles that may present themselves.
The message here is this: do not doubt yourself. If it feels like something isn’t going well at school- it probably isn’t and it’s worth a visit to school to check in and see how things are going. If therapy seems like it isn’t going well and there isn’t a lot of noticeable progress- then something might be “off”. It’s your child, your money and your time. You have every right to question and ask to meet with a supervisor and evaluate how your child is doing.
Be proactive, be a good consumer, and advocate for your child. Empower yourself to be the key to success for your child.
Parents and guardians partnering with Circle Care Services, will hear from our client support staff often, because we know that while we may be experts in the field of ASD, YOU are the expert on your particular child and circumstance. Progress will only be made when working closely together with input from all parties involved.
Understanding these 5 things will help you to become an amazing advocate for your child.
1. Knowledge is Power
Finding out that your child has a life altering condition can be devastating. While you many feel tempted to block out the new reality, the more you know, the better you are able to understand and address any concerns that you may have.
The internet is filled with enough information about autism to keep you busy for the rest of your life. Just be careful with your resources. Look at who is writing the articles or blogs. Is it opinion or is it evidence based research from a qualified professional? Look for motives such as product promotion. Is there a claim that a certain vitamin or supplement will “cure” symptoms or autism? There have been false claims and accusations for decades about cures for autism and causes of autism but to date not one of them has been valid. Be a good consumer of information and tread carefully with information. Look for additional resources to claims that seem “miraculous” or suspicious.
Talk to professionals who work in ASD related fields and have experience with families and individuals. Take notes during conversations and don’t be afraid to revisit these conversations and get more information as you learn.
The more you know, the less you will fear because most fear comes from the unknown. If you equip yourself with knowledge of what is happening now and what might occur in the future, then you are one step ahead of any surprises. You will be better prepared mentally, emotionally and perhaps physically for the challenges that may occur.
2. Ask Questions
Never feel intimidated by medical staff, school personnel, or any other professional that you encounter while securing and maintaining services for your child. Always remember, a doctor is paid to serve you and your child. YOU are in power when you visit your physician because you are the one who is paying for services and it is your health or the health of your child that is being discussed.
If you feel rushed or you lack clarity on something, speak up and say “I don’t understand. Would you kindly repeat that?” or “I feel like we are rushing through this. Can we back up for a minute and revisit what you said at the beginning?” Sure, the doctor or staff member at a busy office might wince at being asked to slow down and spend extra time with one particular person but sometimes people need to be reminded that they are there to help you and that you intend to get the help you need.
Ask until you feel like you have your questions answered.
3. Speak Up
Communication is everything in all relationships whether they are personal relationships or professional. To be a good advocate for your child, you will need a strong relationship with all of the people who are in your network of care for your child.
If you have difficulty with communication and feel like you forget what you were going to say, try writing a list of things down before you meet with any professionals. Make a note of any questions that you need answered or any comments or concerns that you may have.
When you communicate, remember these three things:
Be clear: Writing down your goals or intentions for communicating can be helpful in sorting out how you want to say something. Sometimes when you write things down, you find that some things aren’t as important as you thought and this can help you to narrow down the conversation to the more important points and keep things direct and brief.
Be respectful: this is one of the most effective methods for successful communication. If you are trying to accomplish something, the other party is much more likely to accommodate you if you are respectful and kind. To earn respect, you must give respect.
Be persistent: if there is something that you are trying to accomplish and you just can’t seem to get a response (or perhaps you are facing a denial for services or help), persistence can make the difference. The old saying “the squeaky wheel gets the grease” usually has a negative connotation to it (persistent complaining=response), but if used without anger and with a respectful tone it can actually work for your benefit. Phone calls, letters, emails, personal visits…whatever it takes to get some action for your child- do it. Be persistent if you know that there is something that your child needs and you will get it done.
4. Know Your Options
Once your child is diagnosed with autism, they are entitled to many types of services. Don’t be afraid to reach out to your own personal network and beyond your own personal network to outside organizations to find out what is available to you and your child in your particular area.
Don’t be afraid to seek out second and third opinions in all areas: medical, educational, behavioral and social/community resources.
Trust your intuition with all situations. This includes everything from school to the church day care. If something doesn’t seem right, examine the situation for your own peace of mind.
If you don’t trust a diagnosis, ask for another evaluation by another practitioner in the field. Many children on the spectrum are misdiagnosed with ADHD in the early years of childhood and later diagnosed with autism. It is always good to pursue additional help when there are still questions lingering about behavior or progress.
Learn your rights. There are advocacy groups in every city of every state. There are some in the schools that our children attend. Start with some of the larger nationwide advocacy groups to point you toward what is available in your area. If there is nothing available to you locally, then start an advocacy group!
5. Find Support
Don’t forget to take care of yourself throughout all of this work on your child’s behalf. Don’t forget who you were before you became a parent of a child with autism. If you feel well rested and happy about your own life, you will have more to offer your child throughout all of the academic, behavioral and medical endeavors.
The best analogy is the airplane/oxygen analogy. If you are flying on an airplane and the oxygen masks drop down- you need to put yours on first. If you do this, you are now equipped to help others with their masks. If you neglect your own mask, you cannot help anyone else if you are struggling to breathe. In much the same way- if you are worn too thin either physically or mentally, you cannot help your child during times of need. Being a successful advocate, becomes overwhelming or impossible if you are too tired to think clearly, too tired to make it to all of the various appointments or too tired to write letters or make phone calls. Take care of yourself.
Successfully parenting a child with special needs takes courage and hard work. Show yourself some love by celebrating your wins, and acknowledging that you are trying your best each day. Persevere because you have great power as a parental advocate for your child with autism. One day your child will thank you.
At Circle Care Services, we are more than just your ABA provider.
We are your parenting partner, navigating the ups and downs together with you.
If you live in New Jersey and you have a child who has been diagnosed with autism, reach out today for a free consultation. The staff at Circle Care would love to meet you and be a part of your support network.
Get in touch
Let us be a part of your child’s advocacy team.